After having surgery scheduled and then canceled because his
case is too complex for the doctors where we live…

After days and nights of worry, anxiety, and frustration by
Salesi and me…

After countless times crying and crying until I couldn’t any
longer…

After questioning God’s plan…

…Nami’s brain surgery is finally officially scheduled!

I am extremely scared and elated. I have cried and cried and
I’m not sure if it's the relief or fear that is causing it more...probably equally both. I’m
excited for the possibility of less seizures, better learning, and an overall
better lifestyle for Nami.

It has not been easy coming to terms with the idea of brain
surgery. The prep for it required multiple sedated tests and tests requiring
hospital stays. The planning has been intense…over a very long time. My son
will have to endure extreme pain. There is a possibility it won’t work. There
is a possibility it may only work for a short time because he has so many
tubers that could become new “hot spots”. There may be complications. There are
no guarantees.

Deciding that surgery was the best option for our son was
not an easy process. Every time I made my mind up to try the surgery route, I then
tried to talk myself out of surgery. I convinced myself that we were taking too
drastic of a move. Each time I thought against surgery, Nami stopped breathing
and had a seizure within seconds. One time he fell down an entire flight of
stairs because of a seizure right after I was questioning whether or not to go ahead with the surgery. At one point I prayed to God,
apologizing for questioning His inspiration to get the surgery and vowed not to
question it again. Oh how weak I am: a couple weeks later, my son had about 3
days in a row where all he had were absence seizures. He had started to say a
couple new words and seemed happy. The thought crossed my mind, "Maybe we DON’T
need to put him through all this pain with the surgery since he’s doing so well".
A few hours later I was bathing him. He stopped breathing and he fell face down in
the tub as he seized. OKAY! Note taken! He WILL be getting the surgery!

I’d like to say I never questioned the surgery after the tub
incident, but that is not the case. I have continued to question it. I continue
to question it to this day, but I realize that my questioning is out of fear of
what we are about to endure. Nami will have to have two sides of his skull removed. We will have to fly across the country for this
surgery. Our family will have to be split apart for a lengthy amount of time. The
emotional and physical toll it will take on our little family as well as my entire family is
tremendous. Yet I feel assured that it is the best option for Nami at this
time. Thank you all for your continued thoughts and prayers for our family. Please come back for the next post which will be a happy one...thanks to PGHS and the community!

I went through the same fears when I was told my daughter had to have brain surgery for tsc in 2008. God brought us through, oh how little faith I had, God is the Almighty and can do anything. Praying for you and your family. May God Bless you all.

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About Me

I’ve finally decided to put it out there…cathartic for me and possibly helpful to someone else. I have often felt the urge to share our stories but feared being vulnerable. The experiences I share in my blog have had a profound effect on my life and made me who I am today. Even though I never thought I would write a blog (my writing skills are not that great, I use too many of these “!” and these “…”), I feel compelled to try, even if it is only useful to me and possibly my family.